Contrasting Views of Risk Perception and Influence of Financial Compensation Between Adolescent Research Participants and Their Parents

Abstract

U.S. regulations governing pediatric research do not specify the assent process. To identify best practices, it is important to examine parents’ and adolescents’ views. The present study focuses on parents’ and adolescents’ views regarding possible research risks and the influence of financial compensation on their willingness to accept research procedures. Interviews were conducted with 177 adolescents participating in clinical research for a medical or psychiatric illness, or as healthy volunteers, and a parent. Significant discordance was found between how bothered the teen would feel from research-related side effects and procedures compared with parental report. Most teens were willing to accept non-beneficial procedures without compensation. Payment had significantly greater influence on healthy volunteers and their parents compared with those with a medical or psychiatric illness. Discordance between adolescent and parental views about risks recommends obtaining direct input from adolescents during the assent process. Modest payments should not raise concerns of undue inducement, especially in teens with pre-existing conditions.

Knowledge and views of parents regarding ethical aspects of medical research among their children in Jordan

“…Most respondents in the present study were willing to support their children's involvement in some research from which the study participant will not benefit as this would make an important contribution to help others. This finding is in agreement with other studies . However, parents in our study sample appeared to be more cautious regarding some research procedures that pose some risk to their children such as drawing blood samples and performing X‐rays.…”

“…This finding raised an ethical issue on the role of incentives in research participation. Wiener et al . investigated the views of parents on the role of financial compensation in accepting the possible research risk.…”

“…This finding raised an ethical issue on the role of incentives in research participation. Wiener et al [14] investigated the views of parents on the role of financial compensation in accepting the possible research risk. They found that compensation had significant influence on healthy volunteers compared to parents who had children with comorbidity.…”

“…This is due to different reasons such as high prevalence of different diseases, poverty, weak infrastructure, unfamiliarity with medical research, lack of hospital documentation and poor regulations regarding paediatric research in developing countries . Previous studies have been conducted to assess the attitudes of parents and their children on paediatric research . Such studies have adopted qualitative methods, where they involved small number of participants and relied on parents who had already agreed to enrol their adolescents in research.…”

“…[8] Previous studies have been conducted to assess the attitudes of parents and their children on paediatric research. [9][10][11][12][13][14][15][16] Such studies have adopted qualitative methods, where they involved small number of participants and relied on parents who had already agreed to enrol their adolescents in research. Some quantitative studies have measured parental understandings and factors affecting their children's participation in specific clinical research areas such as anaesthesia/ surgery, [17,18] leukaemia trials [19] and ICU research.…”